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It is with a heavy heart that we tell you all that our dear staff member Tonibunny, who was with SSo from the start and was a good friend to many here, passed away 26th February.

She was a wonderful friend to many members of the site. She readily shared all her knowledge and experience of scoliosis and was always willing to help and encourage anyone who reached out to her. When she wasn't sharing her experience of scoliosis, she shared her love of books, art, and music. She had a love of learning and life that was infectious.

Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Mark, I am sorry for offending you. I certainly wasn't trying to find out about you, I was reading through this whole thread about the Scoliosis SOS Clinic, and I just noticed that you had got the wrong end of the stick in what curvyclair had written.

Re: Scoliosis SOS Clinic, Suffolk, Ipswich

In answer to those who asked about the price of treatment at the Scoliosis SOS clinic in Suffolk : we paid the equivalent of £2950 for the four-week treatment.

Added to this, we rented a cottage in nearby Woodbridge, as the accommodation nearer to the clinic was full, but the price was similar to the clinic's places. (We brought our daughter for two weeks in August, and two weeks in December 2010. The rent was a bit cheaper in December.)

Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Hi

I didn't get offended at the post, i guess you didn't realise the thread was a year old, i linked you to that post so you could see how surgery sometimes is the only option, no amount of exercise could ever remotely hope to reduce the size of my curve

sometimes i get frustrated when i read about how wonderful these clinics are and how bad surgical intervention is.

It almost like i am being made to feel seedy or dirty in some way for having had a surgical intervention.

If this clinic can perform miracles then why is the NHS not banging its door door to refer us sufferers

If this helps sufferers then great thats fantastic i have no problems with it but the misinformation that is put out about surgical intervention needs addressing and scaremongering about surgery is unhelpful (not that i am accussing you of this) i am talking here generally about stuff i have read here and on other websites

Re: Scoliosis SOS Clinic, Suffolk, Ipswich

no amount of exercise could ever remotely hope to reduce the size of my curve.

sometimes i get frustrated when i read about how wonderful these clinics are and how bad surgical intervention is.

It almost like i am being made to feel seedy or dirty in some way for having had a surgical intervention.

If this clinic can perform miracles then why is the NHS not banging its door door to refer us sufferers

If this helps sufferers then great thats fantastic i have no problems with it but the misinformation that is put out about surgical intervention needs addressing and scaremongering about surgery is unhelpful (not that i am accussing you of this) i am talking here generally about stuff i have read here and on other websites

Mark

Dear Mark,

I certainly would never, never judge you or anyone else who opts for surgery, especially when their curve is really severe. And I do not see you or anyone who does have surgery as seedy, dirty, or second-rate in any way at all. God forbid! That thought never even crossed my mind!

I can only speak for my daughter's situation, as she was so dead set against even contemplating surgery, which was what she had been told was the only solution for her, and was getting panicky and depressed at the thought of it, that I was mighty relieved to find a solution which suited her and her situation.

The Scoliosis SOS clinic has never ever claimed that her back could be completely returned to normal, and they do stress how important it is to keep doing the exercises regularly and on a long-term basis, which is no worse than someone who has a chronic illness, and has to be resigned to taking medication for many years.

What is important is to find a treatment which suits each individual situation, reduces pain and allows people to lead a full life, isn't it?

I have a cousin in West Sussex whose daughter has scoliosis, and while she was interested to hear about my daughter's treatment, she and her daughter are quite satisfied with the brace she has to wear, and with the prospect that she might eventually need to have an operation. We can share our experiences without feeling judged or pressured into doing likewise.

Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Hi all,

It has been fascinating readding all your posts on this thread, but I am now even more confused than ever!! I was on the waiting list for surgery, but have backed out after been told about how ill I will be after surgery. I have two young children and any risk through surgery I take will be their risk not mine.
I think I was hoping to find some magic wand on this thread, which I know is stupid. I now feel quite lost and uncertain what to do. Blahhhhh!

Thank you to everyone who posts on here, I feel I have taken another step in my acceptance of it all.

Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Originally Posted by TAMZTOM

we've also just transferred up to Sheffield, Mr Ashley Cole, who has been excellent

Mr Cole is my surgeon - he's lovely, isn't he? Very honest and straightforward, always takes time to answer questions (and isn't afraid to say so when he doesn't know the answer) and has quite a wicked sense of humour too

Good luck with the Spinecor. Even if it doesn't manage to stave off surgery indefintiely, it should give your daughter a few more precious 'growing years'. Plus it will still allow her muscles to be active, which is a big advantage over the hard braces.

Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Originally Posted by Round The Twist

OMG! That is awful, I know my daughter might end up having surgery one day, and I know the brace she is wearing might not be the best one out there for stopping her curves but I am 100% sure she is getting the right treatment from Doctors who have a wealth of hundreds of years experience behind them and not some quack who is making a lot of money from some very scared parents and screwing up their lives and bodies in the process

Re: Scoliosis SOS Clinic, Suffolk, Ipswich

Yes, of course, my daughter is wearing a TLSO brace made at the RNOH, she was cast for it and the chap who made it was very particular!
So far this is her second brace as she outgrew the first one in 6 weeks, it has reduced her thoratic curve by 10 degrees and her lumbar curve by 3 - 5 degrees, she is stable at 33degrees T & L Hopefully it will stay that way until our next appt in Feb 2012 & beyond.

I'm really sorry to read about your daughters Diagnosis of the Chiari Malformation and Syringomyelia.
We haven't investigated the cause of my daughters Scoliosis as I have so far assumed it is hereditary as I have it too, but I don't know why I have it either, suffice to say in my 23 years of treatment I have never had a full spine MRI, although I did have a Myelogram in 1991 which was pre MRI and I believe that was designed to show up major problems with the Spinal Cord.

Liz aka Kat - I will answer to either Diagnosed with AIS at the age of 13. 1st surgery - Mr Ransford @RNOH in 1991, curves = 55T 45L, fused T2 - L2. 2nd surgery - Mr Harrison @RNOH in 2006 - revision of original surgery due to broken rod. Now have Degenerative Disc Disease above and below my fusion and have recently been diagnosed with HMS and Fibromyalgia and therefore am in a lot of pain daily.PM me if you want to know more.